I started with MGUS a few years ago which was confirmed Myeloma in Feb 23. I am lucky in having no real symptoms before diagnosis.
I agreed to the RADAR trial and has been a positive in may respects. Access to more drugs, closer monitoring and contributing to research which will hopefully benefit others.
The induction went well and reduced my paraproteins to a very low level, Dexamethzone and the effect of steroids was the only challenge, hyper and not able to sleep. SCT in October 23 in Clatterbridge in Liverpool. I cannot speak highly enough about the standard of care. 28 days in hospital as fighting an infection. The 100 days post SCT went well then back to Chester. Another fantastic haematology department.
I am just starting cycle 10 of my maintenance treatment. I was randomised to lenalidomide 21 days the 7 day break. Probably the easiest treatment life style wise as all tablets. No significant side effects so far and paraproteins stable. Long may it stay that way.
I have to say my experience has been thinking about what is coming has been harder than the reality of the treatment. The best advice I can give is that given to me, stay as healthy as you can with exercise and diet it will put you in a good position
Hi Emma
I am on the Radar trial, I had my SCT last September, and currently on a maintenance regime. If you read the paper on the trial there are various routes that your dad could be placed on, this will depend on the bone marrow results as these are randomised, unless the patient is classed as genetical high risk, which I ‘am.
As you stated everyone’s journey is different but for me it has been really good so far, no worse than the induction drugs, I had 12 weeks similar to the induction at the start of the year and now on fortnightly treatment, which is an infusion on day 1 & 15 and 21 days of tablets then a free week; this regime was selected, as I have mentioned, as I am high risk.
Good luck for the journey ahead.
Ian
Hello everyone
My first time posting.
My Dad got diagnosed with myeloma in January and started on the radar Trial. He’s now up to his 100 days post transplant and we are waiting on results of his bone marrow to discover what’s next.
Just wondering if there are any other people on this radar journey who can share what the maintenance regime is like please?
So far, he has responded really well and he is now back to doing his normally fault routines – golf and spending time with his grandson.
I’m just a bit nervous with what is to come. My Mum also had myeloma. She had a pretty rough ride after transplant as her myeloma came back within 6 months. I know everyone’s journey is difficult but sometimes it is hard not to compare especially when you’ve already lived that life with a parent with myeloma. Their diagnosis journey was different, Dad was diagnosed very early with hardly any symptoms and my Mum was extremely poorly by the time she was diagnosed. Then she fractured her femur and her mobility deteriorated. Their treatment journey has been very similar – induction drugs and then stem cell transplant. Mum didn’t go on a trial when she was diagnosed and there was no maintenance treatment either. My Mum died in February 2021.
I’m just hoping that my Dad continues to have the quality of life as life got extremely hard for my Mum especially after she broke her femur.
Thanks for taking the time to read.
Emma
Hi
I was also 49 when diagnosed with a fracture in sternum and went on the radar trial and still on it now. Roll on nearly 2 years and I am well, working full time, back running and pretty much normal life. I am on maintenance treatment now A little tired now and again but nothing to stop me doing daily routine. Although it was a scary time at start you soon settle into a new normal and i just cracked on with the treatment taking each step at a time and ticking each stage off. I managed to work most of the way through just finishing before stem cell transplant and back after 3 months. You will get through it and back to pretty much normal living in the end!
Happy to answer any questions.
Hi,
I was hospitalised 4 weeks ago having collapsed at home. The collapse was caused by a fractured vertebrae in my back and while in I was told I have myeloma. I was in hospital for three weeks, have been accepted in the RADAR trial and chemo began last week. Today is day 10.
My issues started last year with what I thought were gym related issues with my ribs. Although this summer I had presented to my GP and requested blood tests and also A&E where there was unfortunately no xray was taken as it was assumed this was a sporting injury. With what I’ve learned over the past three weeks I’m certain I could have ticked the majority of myeloma symptoms in June or July this year so a little frustrating not to have been picked up prior to my collapse.
I am 49 and I’m really keen to speak with fellow myeloma patients around my age to understand a little of the journey. What expectations should I have about a normal life, the adjustments that we have to make and how people have dealt with the process.
I’m blessed with some wonderful friends and family but being able to understand the experience and perspective of someone similar age with myeloma would be really helpful whether through here or any signposting to a particular support group.
Thanks for reading.
Anonymous
Hello je64,
Thank you for your response and I am so pleased to hear that you are now in remission. My consultant confirmed that I was eligible for RADAR XV so, like you, I accepted gratefully and eagerly. Chemo starts on 28th Aug. It is a 100-mile round trip but Addenbrooke’s does seem to be where it’s all happening so I don’t mind that. Thankfully I’m recently retired. Interesting to hear that you were able to drive yourself back from your appointments. Hopefully after the first few I’ll be able to too. Just back from a 10k walk so I am starting chemo from a position of good health. Best wishes to you.
Hi bubble,
I was diagnosed with high risk smouldering myeloma in 2009 which progressed in August 2023 to multiple myeloma. I jumped at the opportunity of the RADAR trial, I had my stem cell transplant in February this year and I am now in the process of consolidation treatment. Next step is maintenance treatment which will mean hospital visits every two weeks until disease progression or drug intolerance. Currently I am thankfully in remission.
The trial will mean more hospital visits for tests and treatment, which you will need to consider. I am being treated in Derriford Hospital in Plymouth where the care I have received is amazing and I am so grateful to all the wonderful staff there. I have driven myself to the hospital for all my chemo as it is only 25 minutes from my home and I felt well enough to do so. As per most myeloma patients, I have had issues but all have been dealt with incredibly quickly. I felt for me that the trial offered me the best possible treatment available currently. I would suggest talking to your consultant and their team in depth to help you to make the right decision based on your personal needs.
Sara, I’m on the radar trial and apart from some insomnia on steroid day, some fatigue I have been pretty much ok. I’m on my 4th chemo cycle which ends next week and see the the stem cell pre op team next week after the chemo. I saw my consultant 2 weeks ago and she said my relevant numbers had come down a lot in a good way. So I’m hopefull.
Anonymous
Hello all – this is my very first post. Male, age 59, diagnosed last week and very worried about what is to come. I have an amazingly supportive and caring wife, thank God.
I would value views on the RADAR trial.
My consultant has said that, if eligible, then I can choose between the ‘standard’ treatment and participation on the RADAR XV trial, which will mean travelling to Addenbrooke’s. I am trying to weigh up:
STANDARD TREATMENT
– Much more convenient (20 mins to Peterborough rather than an hour or more to Cambridge)
– Treatment would start very soon.
RADAR
– Need to travel to Addenbrooke’s
– Long delay before treatment starts
– What appears to be a degree of ‘personalisation’ would seem to be attractive.
I am retired so the time/travel involved with RADAR is not really a major worry.
Any thoughts? I won’t know until after a Multi-Disciplinary Meeting on Monday whether or not I am eligible for RADAR but largely due to the ‘personalisation’ I think it sounds like it may be the better way to go.
gcParticipant
Thanks for your replies. Its always good to know you are not alone.
As far as post SCT goes then life is different. I havent gone back to “normal” and accepted that isnt going to happen. I am in the high risk group and didnt get a complete response so still some myeloma present. I am in the Radar trial so on a maintenance programme which (touch wood) is keeping things at bay. I have fractures in my back so back pain is a pest and my mobility is not as I would like. The fatigue drives me mad.
Having said that I lead a pretty full life, and enjoy the things I do. I am still not good at pacing myself so frequently ” overdo” things. I’ve taken up new hobbies and now appreciate the area I live in so happy taking short day trips. Thoroughly enjoy a coffee and cake with friends! I enjoy the little things.
Anne- I’m in Scotland too. I do hope the peak has passed as I said earlier Covid seems rife- and that’s from people who test!
I didn’t respond to initial treatment on radar trial, I then had 2 rounds of dtpace with a partial response. 1st attempt at stem cell harvestzafter this failed. I then had 4 rounds of krd (carfilzomide, len and dex). I struggled with the dex dose but persevered to get to a successful stem cell harvest attempt and sct as this was the most successful treatment in lowering paraprotein
I’ll be honest I struggled with extreme fatigue throughout, fairly certain the dex causing crashes each week when I came off it as I had this in the 4th week of yhe cycle as well. Hopefully you’ll tolerate the dex better!
Hi
Thanks you for your lovely response and sorry I didn’t spot it sooner!
I was originally diagnosed in December 2013.
I have Sjorgren’s Syndrome. (I don’t expect you’ll have heard of it, but it’s one of those autoimmune conditions!) and inflammatory arthropy. I was having 6 monthly Rituximab infusions to help my joints. These started in 2018 and basically gave me back my life. No more joint pain although the fatigue and brain fog were still evident. The regular blood tests showed up a problem with my IgA level so I was referred to haematology. Ct scans showed nothing and I had no symptoms that I was aware of. As my levels were still rising I had another Ct scan which again was clear so they requested a bone marrow biopsy. This showed the Myeloma.
I had understood that the Myeloma was smouldering although it was still something of a shock and a lovely Christmas present!!!!
In February my husband, Martin and I went to meet my new consultant and were rather shocked to hear that they wanted to start treatment immediately!! I opted for the RADAR XV because, well why wouldn’t you. The bone marrow biopsy was uncomfortable rather than painful so the fact that I would have to have more didn’t worry me.
Unfortunately the dental check up before treatment could start showed that I needed a wisdom tooth removed. I have to admit at that point I did have a bit of a sense of humour failure, but it was all arranged through the hospital, done very quickly and I had no problems.
The 12 week induction chemo was fine.
I had my stem cell harvest on Monday and reached the sum of 5.2. Applause all round. I had a bit of a calcium crash part way through. I started feeling hot and faint. Obs were fine. So you lie there thinking I really don’t feel well, but am I making a fuss? The nurse gave me 2 calcium tablets and as if by magic I immediately felt better!
So now I’m waiting for the SCT. I have a date for reinfusion on 2nd August. It’s a bit complicated here as I live in Torquay and the harvest and reinfusion are done at Derriford Hospital in Plymouth. So I will be admitted to Torbay and ambulanced to Derriford!
Really reassured by your comments re your SCT but would like to know the really bad bits.
I haven’t been to church since starting the induction chemo. But my vicar came and gave me home communion last week, which was lovely. I’m in 2 minds as to whether to go between now and admission to hospital and would welcome your advice on that, although I appreciate that we are all different.
I have a BIG birthday coming up at the end of July and my 20 year old daughter, Sophie has arranged a coffee and cake sale at my church to raise funds for Myeloma UK. She wanted something positive to come out of my diagnosis.
I too have a rock for a husband. Where would we be without them?
My faith too means that I have felt at peace throughout. Although I am rather apprehensive about the next bit!
Thanks again for replying.
Sara
My mum is currently on the RADAR trial and has finished her induction treatment (4 cycles of lenalidomide, dexamethosone, cyclophosphamide and bortezomib) – she has responded to well to the treatment and we were all geared up for her have the SCT at the end of July, she had her Hickman line put in and was due to start her GCSF injections tomorrow but we got a phone call this afternoon to say after an MDT meeting they have decided she is not eligible for an SCT and they are removing her from the trial with no explanation – they have made an appointment for Monday with the consultant but we are both just lost and confused about what happens next as we only know about treatment options with the trial – I assume they will explain on Monday but that feels like a long time away when she has been in tears all afternoon as she feels she has done something wrong which is not the case but don’t really understand what’s happened. Has anyone else experienced this? Part of me is glad she’s not having the SCT as know how difficult it can be but the other part of me worries about the future as SCT was always sold to us as a bit of a golden ticket to a long remission – she’s only 62 and I’m so worried about what this means now.
Hi
Is there anyone else on here taking part in this trial?
Currently on week 11 of the 12 week induction chemo so interested to hear of other people’s journeys.
Please could someone tell me about their experience of this. How was the drug administered? How often and by whom?
I’m on week 11 of my induction chemo and am part of the RADAR XV trial.
